Social Science and Medicine
Volume 120, 2014, Pages 387-395

Bounded agency in humanitarian settings: A qualitative study of adherence to antiretroviral therapy among refugees situated in Kenya and Malaysia (Article)

Mendelsohn J.B.* , Rhodes T. , Spiegel P. , Schilperoord M. , Burton J.W. , Balasundaram S. , Wong C. , Ross D.A.
  • a MRC Tropical Epidemiology Group, Department of Infectious Disease Epidemiology, London School of Hygiene and Tropical Medicine, London, United Kingdom
  • b Department of Public Health and Policy, London School of Hygiene and Tropical Medicine, London, United Kingdom
  • c Public Health and HIV Unit, United Nations High Commissioner for Refugees, Geneva, Switzerland
  • d Public Health and HIV Unit, United Nations High Commissioner for Refugees, Geneva, Switzerland
  • e United Nations High Commissioner for Refugees, Nairobi, Kenya
  • f United Nations High Commissioner for Refugees, Kuala Lumpur, Malaysia
  • g United Nations High Commissioner for Refugees, Kuala Lumpur, Malaysia
  • h MRC Tropical Epidemiology Group, Department of Infectious Disease Epidemiology, London School of Hygiene and Tropical Medicine, London, United Kingdom

Abstract

HIV-positive refugees confront a variety of challenges in accessing and adhering to antiretroviral therapy (ART) and attaining durable viral suppression; however, there is little understanding of what these challenges are, how they are navigated, or how they may differ across humanitarian settings. We sought to document and examine accounts of the threats, barriers and facilitators experienced in relation to HIV treatment and care and to conduct comparisons across settings. We conducted semi-structured interviews among a purposive sample of 14 refugees attending a public, urban HIV clinic in Kuala Lumpur, Malaysia (July-September 2010), and 12 refugees attending a camp-based HIV clinic in Kakuma, Kenya (February-March 2011). We used framework methods and between-case comparison to analyze and interpret the data, identifying social and environmental factors that influenced adherence. The multiple issues that threatened adherence to antiretroviral therapy or precipitated actual adherence lapses clustered into three themes: "migration", "insecurity", and "resilience". The migration theme included issues related to crossing borders and integrating into treatment systems upon arrival in a host country. Challenges related to crossing borders were reported in both settings, but threats pertaining to integration into, and navigation of, a new health system were exclusive to the Malaysian setting. The insecurity theme included food insecurity, which was most commonly reported in the Kenyan setting; health systems insecurity, reported in both settings; and emotional insecurity, which was most common in the Kenyan setting. Resilient processes were reported in both settings. We drew on the concept of "bounded agency" to argue that, despite evidence of personal and community resilience, these processes were sometimes insufficient for overcoming social and environmental barriers to adherence. In general, interventions might aim to bolster individuals' range of action with targeted support that bolsters resilient processes. Specific interventions are needed to address locally-based food and health system insecurities. © 2014 Elsevier Ltd.

Author Keywords

Migration Antiretroviral therapy Forced displacement adherence Qualitative analysis Malaysia Kenya Refugee

Index Keywords

urban area refugee Human immunodeficiency virus infection health system insecurity disease treatment lamivudine plus nevirapine plus zidovudine emotional insecurity human highly active antiretroviral therapy Refugees social aspect coping behavior Anti-Retroviral Agents antiretrovirus agent Kenya HIV Seropositivity medication compliance Human immunodeficiency virus qualitative research Young Adult Humans Adolescent male environmental factor social problem semi structured interview female qualitative analysis Malaysia Article patient compliance adult migration food insecurity Medication Adherence humanitarian aid
Link
https://www.scopus.com/inward/record.uri?eid=2-s2.0-84910036436&doi=10.1016%2fj.socscimed.2014.06.010&partnerID=40&md5=e2433a0083b97f503e6c9873d4e388a0
DOI: 10.1016/j.socscimed.2014.06.010
ISSN: 02779536
Cited by: 8
Original Language: English